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So it's been a long weird month. After a biopsy they diagnosed bullous pemphigoid. Apparently it's rare, especially in my age group, especially triggered by Bactrim. They are actually writing a case study about me. It's a bizarre feeling.
I am out of Shreveport burn unit. I cannot recommend lsu Shreveport. Every place is defined by its employees and they did have some excellent employees, but there was a particular nurse and cna pair who...well lets just say I didn't always feel safe. Hydro therapy is hell. In hydro, they scrub at your raw wounds even when you're crying and begging. Even dilaudid 2 mg was not enough to douse that pain. They kept trying to do wet to dry dressings--which rip off the new skin--even with me begging them not to until I had to put my foot down and tell the doctor to order them not to. A lot of blood and skin get washed down that drain and if there's any place a good candidate for being haunted, its hydro therapy. When I heard grown men screaming out the same things I was--"please god make it stop, just make it stop"--I knew it wasn't just me. Vashe burns like hell but scarlet red is effective, fast and soothing. Light pressure dressings seem to help with comfort and edema.
I am much better now but at one point literally 90% of my body was covered in blisters and open wounds. I even got them on the sole of my foot and my anus. I am having to use a walker at 35 years old because of the damage this thing has done to my legs. But that is temporary and I am working every day to get to walking on my own again. For a while every position hurt and I wound up with pressure sores to buttocks related to had only one position I could get into without agony. This disease has kept me out of work for over a month. It has taken my hair--I had to chop that off because at one point there was so much wound drainage from my scalp that it literally was unable to be detangled. It has been a surreal nightmare and I don't know that I will ever get over seeing my skin slide off of my legs and wash down the drain. There have been many times I have begged to die because of the sheer physical pain. I did not know there was such pain that you become nothing more than a screaming animal, all thought blasted away. I have literally been unable to do anything but scream from pain at times. The fear that comes with that kind of pain can be crippling and I am still sometimes having to pick my courage up off the ground just to do simple things, like transfer and toilet. Sometimes the fear paralyzes you. cheap red bridesmaid dresses
But I am better now. I'm just waiting on my legs and a few sores on my chest to heal and I can go home and do my own physical therapy at the wellness center pool. Every day the wound care nurse here shows me progress and my legs are mostly healing with only a few bad spots. For a while I literally wept cups of fluid from my wounds and my sodium, potassium, and hemoglobin went critical. I had to have a blood transfusion a couple of nights ago. Apparently critical hemoglobin makes you tired, dizzy, confused and cold.
But now my legs are only putting out a little fluid and I am able to get up more. The pressure areas on the buttocks are almost gone and I can sit upright without pain again. My hands tremor and I'm having to retrain them all over again--even my handwriting is pretty shitty right now--but I will get my drawing back. There is finally light at the end of the tunnel. I'm at cornerstone specialty for wound care and I actually feel safe here. Dr shafiei and his staff are very good about pain control and are good about explaining what I'm on and why. Their wound nurse is good about assessing for pain and when you grimace, she stops touching that area, reinforces the dressing there and applies medicine, and is good about helping you use mental tricks to deal with pain. The food here is generally good about protein and vitamins and being nutritionally sound for healing and I have some people here who definitely care about suffering people. I definitely CAN recommend cornerstone from my experience so far.
It has been a long, weird nightmare of a month. My mom has had all she can deal with and more, taking care of my home and hers and trying to do her best to take care of me. She has done more for me than I could ever have asked, gracefully and strong. She has done everything she can to get me more comfortable and help me be strong. She has been my rock and I honestly don't know how I would make it without her. And when she can't fix it--which I can tell from her face haunts her--she does her best to comfort me while we wait for relief. I can tell looking at her that she is exhausted, but she has shown over and over again that she will do anything for me. Even when all I wanted to do was die, to get away from the pain, I refused and held on, for her. Because I am the only child she has and I can't leave her alone. Because she has had enough pain for one life. More than enough. If there is anything positive about this nightmare it's that we found out how much we mean to each other. We aren't perfect, and neither is our relationship, but love bridges all misunderstandings.
I have had some perspective changes. I have gone through anger, hopelessness, despair, wondering what I did wrong to deserve this...but there are a lot of things I'm finally coming to peace with. I have literally almost died a few times this year and that changes a person. I have come to peace with some of my biggest areas of mental suffering. Come to peace with my life in general. I don't worry anymore about money. I either will have it or will find a way to make do without. I no longer worry about my looks. If I can be free from pain with intact skin, and function independently without a walker and such, that will be good enough for me. So many things that used to upset me now seem small. All I want is an end to pain. All I want is my health back. I am currently covered in a fine lace of pale pink scars, which will probably fade, but right now I treasure them. Because they mean I have healed. They are a visible sign that there is progress.
I see light at the end of the tunnel now. Most of the body has healed and the rest is trying hard. I'm going to have to be on immune suppressants for at least two years and had to have immunoglobulin g via iv in pretty intense doses, plus cellcept and steroids, to try to get my immune system to stop attacking my own skin. I think we've got it in remission. But the upshot is, Bactrim triggered this. If you are taking any new drug and begin to show any signs of allergy--a blister, itching rash, trouble breathing, anything--go to your doctor immediately. Bactrim is a very commonly prescribed drug and I have heard many, many stories from my nurses and aides about people getting Stephens Johnson, respiratory, or other reactions to Bactrim. Be careful guys. Don't let this happen to you. I love you all. Sorry I've been bad about updating. But trust, there is progress now. I'm certain now that I will be out in a couple of weeks.